Genetic terminal illness and a heartbreaking decision

I find myself extra emotional this month with the controversial Roe vs Wade being overturned in the USA even though it doesn’t directly effect us here in our amazing home of Australia. At 24 I was diagnosed with a genetic terminal illness called Huntingtons Disease (also known as HD) it took my grandfathers life, my dads life and eventually it will take mine as there is no treatments or cure. Huntington’s disease is a rare, inherited disease that causes the progressive breakdown of nerve cells in the brain. Which means soon I will slowly loose my ability to walk, talk, think,swallow and move leaving me a vegetable with jerking movements. People compare Huntingtons to having MS ( like Selma Blair) ALS (like Stephen hawking) Parkinson’s (like michael J fox) and dementia (like robin williams) but all at once. It’s also known as the worst disease know to man. It’s a hard future to accept. Being that it is genetic when it came time for my husband and I to have a baby we crossed a huge issue as every parent that has HD has a 50 percent chance of passing it down to their child. We both knew that we can’t save me but we could ensure our child would never have to live with this disease. Especially since we risked juvenile Huntingtons which would mean our child would be severely disabled for 10+ years till they eventually pass away. We couldn’t knowingly do this to our child. It wouldn’t be fair. Not to them or my husband who already lives knowing my time is numbered, and he will eventually have to be my full time carer and loosing possibly our only child to the same cruel disease just wasn’t an option. We fell pregnant a few years ago and at 12 weeks we had a CVS test done (a big needle through the tummy that they can take the fluid and test) and unfortunately it came back positive that the baby did have Huntingtons. So we had to make the gut wrenching choice to end the pregnancy. This was the hardest thing I have and will ever go through in my life. Nothing could have ever prepared me for the heartbreak that would follow. We wanted this baby more than anything you could ever imagine. We had talked about names, emptied a room and even though we knew there was a 50 percent chance we were hopeful. But we were heartbroken. We still have the babies ashes kept away with a teddy and think about them every day. We were lucky enough to fall pregnant after this with a healthy little baby boy. And even though I carry guilt I can live knowing that we have stopped this devastating disease at me. With Roe vs Wade being overturned I wonder how many children are now going to be born just to suffer through what time they have alive. And the parents that have to live knowing their child is suffering because of them. I saw the pain it caused my father to look at me and I’m glad I never have to look at my child the same way. I know it is a very controversial topic and I don’t like to speak about it for this very reason but my heart is breaking right now for people who are in the situation we were but in the USA. Huntingtons will now have no choice but to spread and families will now be plagued with the disease for years to come. I’m grateful to live in Australia and have my happy healthy little baby boy but my heart breaks for others who won’t have the same choice.

Posted by AmyRoseSainsbury, 1st July 2022